There are two very distinct and separate “beliefs” when it comes to tick borne diseases. The IDSA says that Lyme is rare, hard to get and easy to treat. They follow a standard treatment protocol, with very little variance between patients diagnosed immediately after a bite and those not diagnosed until weeks, months and even years later. When some patients still have symptoms, they say treatment was sufficient and that some people will have “Post-Treatment Lyme Syndrome” which supposedly will eventually go away.
ILADS believes that tick borne diseases are an issue and can be very complex. They require a clinical diagnosis, based upon symptoms and a patient by patient treatment protocol is required as every patient is different. They also believe that a patient should be treated until the symptoms are totally gone.
Having seen how my symptoms progressed over a period of years, I think I would prefer to listen to the ILADS side of things! A suitable treatment, until my symptoms are gone, would be amazing!
What should be of interest to everyone is that, at present, the National Guidelines Clearinghouse (NGA) only has the ILADS Lyme Guidelines on their site as the IDSA Guidelines were removed as they were out of date, according to the requirements to be on the NGA site. Apparently, it is going to be 2-5 years to update the IDSA Guidelines, yet they are the ones that the CDC and Infectious Disease Doctors still refer to. Why are Doctors not allowed to review both sets of guidelines and determine what will work for their patient?
I am personally unaware of any other multi-systemic illness where a patient is treated for a specific length of time and, if symptoms still persist, they are told that they will eventually go away. That just doesn’t make sense to me and to thousands of other people going through the same thing as I am.
Unfortunately, there is a certain stigma to those of us that are “chronically” ill as there are still MANY people that believe we are making this stuff up! A local radio station has a Doctor on periodically to respond to questions. A recent question was whether the Doctor thought that Doctors in our province have become more knowledgeable about the diagnosis and treatment of Lyme disease. The first thing out of the Doctor’s mouth was that this remains a controversial subject. He noted that there was a standard test or that you diagnosed clinically based upon the bull’s eye rash. He noted that “There is a view in some pockets of the medical and patient community that the test that we have here is inaccurate and that people developing other symptoms, you know, chronic fatigue, chronic pain can be related to Lyme disease if undetected.” He noted that he hasn’t seen anything that “convincingly convinces” him of that. He noted that the Infectious Disease Specialists people in Nova Scotia feel that what we have here is sufficient and that they are on top of the issue. He did note that there could be variants, strains or infections that get missed but that Nova Scotia is on the right track. He ended his answer with a comment that there was a little bit of a conspiracy element to the “other side”.
Although I didn’t hear the original discussion, a friend advised me of it and I sent some information to the show’s host (who has had me on his show in the past to talk about Lyme in the province) and asked if he could forward it to the good Doctor in an attempt to enlighten him on the issue of Lyme. The host (Rick Howe) then asked me to be on the show to respond to the discussion.
When talking about Lyme and other tick borne diseases, I always try to use reputable sources for my info. With regard to the accuracy of the present blood test that is utilized in Canada, the ELISA, I made note of the Canadian Adverse Reaction Newsletter, Volume 22 – Issue 4 – October 2012 (http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php) which states that Lyme should be a clinical diagnosis and that the test should be supplemental, if used at all. It also noted that there are three possible reasons for a false-negative. In other words, the test is not 100% accurate.
I also advised that according to Nova Scotia’s Tick Borne Diseases Response Plan approximately 50-70% of people present with an initial Erythema Migrans or EM rash (better known as a bull’s eye rash) which is a definitive diagnosis of Lyme. Although this percentage is under dispute, even if it is true, it limits the number of people that can be quickly clinically diagnosed. As well, of those that do develop a bull’s eye rash, many will not see it as it could be under the hair, on the back of the knee, or any number of other areas not easily visible.
Between these two issues alone, it can leave many people that do not receive a timely diagnosis. On this basis, I noted that according to the Centers for Disease Control and Prevention (CDC) later signs and symptoms of untreated Lyme disease (days to months after tick bite) could include:
- severe headaches and neck stiffness
- additional EM rashes or other areas of the body
- intermittent pain in tendons, muscles, joints, and bones
- heart palpitations or an irregular heart beat (Lyme carditis)
- episodes of dizziness or shortness of breath
- inflammation of the brain and spinal cord
- nerve pain
- shooting pains, numbness, or tingling in the hands or feet
- problems with short-term memory
Would all that convincingly convince you that Lyme can develop into something more than just a rash and flu-like symptoms?